Healthwatch Westmorland and Furness is helping patients shape future neurology services in South Cumbria.
Last year we heard more and more about the poor provision of neurology services in South Cumbria and the impact this had on patients.
One patient, who was on the waiting list for scans at Preston having waited three years for an appointment (despite having MS and being the primary carer for other family members) told us:
“I don’t know what happens now, I don’t have a neurologist.”
Neurological conditions
Neurological conditions include epilepsy, brain injury, Parkinson's, Alzheimer’s, motor neurone disease, multiple sclerosis, stroke and brain tumors, although there are many more conditions which have a neurological element.
Past provision in South Cumbria
Until 31st March a neurology service for South Cumbria was provided by North Cumbria Integrated Care (NCIC), which runs Cumberland Infirmary in Carlisle and West Cumberland Hospital in Whitehaven, to Lancashire and South Cumbria Integrated Care Board (LSC ICB). NCIC had limited capacity to provide its own neurology patients with a service and it became increasingly difficult to provide a meaningful service to the neuro community in South Cumbria, leading to (we have been told in some cases), year-long waiting times for diagnosis and referral.
New, local care
In January LSC ICB announced that the provider of neurology services in South Cumbria from 1st April would be Bespoke Healthcare, based in Preston.
While neuro charities such as Headway, MND, Parkinson’s UK and MS Society, welcomed the announcement of a provider, they had concerns that they had not been communicated with about the process, not all patients had received letters informing them of the chance, as well as what would be provided by Bespoke, and how the ICB and Bespoke intended to tackle the list of 2,900 patients.
After discussion with representatives of Headway, MND, Parkinson’s UK and MS Society we added our voice to calls for the ICB to engage with patients. This led to a joint meeting with support groups in March, and two well-attended patient engagement meetings on 30th April at our Duke Street office in Barrow, and at Kendal Leisure Centre, as well as online.
Our impact
These informative meetings reassured patients and community representatives. They were the first time that many patients got to ask questions of service providers, and to communicate directly with commissioners of their care. For the ICB and Bespoke, they were able to get across the challenges they face, ask for patience, and build trust and manage expectations.
We will continue to work with patients and neuro support groups to ensure that their voices are heard, communication is regular, and that gaps are identified and addressed in the new service. In quarter three and four of this year (September to March) we would like to work with them and the ICB and Bespoke, to assess the patient experience of the first six months or so of the new provision, and hold the providers to account.
Alongside this, we will explore what neurology provision in Eden – still provided by NCIC – is like.
Do you or a loved one have experience of neurology services? Could you spare some time to tell us about that?
We would like to collect personal stories from across Westmorland and Furness to bring this important issue to life.
Please call us on 0300 373 2820 or email [email protected].
If you would like, your feedback can be anonymous.